Susan G. Komen is marking a significant milestone in the effort to improve care and outcomes for people facing inflammatory breast cancer (IBC), thanks to years of grant-supported research, advances in disease diagnosis, and advocacy led by Komen and its partners.

Already approved by the Centers for Disease Control and Prevention, these specific diagnosis codes for this aggressive and often misdiagnosed form of breast cancer will go into effect starting Oct. 1, 2025. These new codes will enable better disease documentation, helping patients begin treatment sooner without unnecessary delays. They will also allow researchers to collect better data on how many people are affected by IBC, how the disease progresses and which treatments are most effective.

IBC is one of the most aggressive forms of breast cancer. Unlike other breast cancers, it rarely presents as a lump. Instead, patients often notice swelling, redness or skin thickening. These symptoms can be mistaken for infections or skin conditions, often leading to misdiagnosis and delayed treatment. For decades, the lack of clear diagnostic criteria and specific medical codes for IBC has created barriers to timely care. Without the proper tools to identify IBC, health care providers have struggled to distinguish it from other conditions. Patients often do not receive a correct diagnosis until the cancer has already spread beyond the breast, contributing to a more advanced stage and making it more difficult to treat.

Recognizing the urgent need to address these challenges, Komen joined forces with the Inflammatory Breast Cancer Research Foundation (IBCRF) and the Milburn Foundation to form the IBC Collaborative in 2016. This group brought together clinicians, researchers, patients and advocates to push for change.

One of the collaborative’s most significant accomplishments was the creation of the IBC Scoring System, which was converted into an accessible online tool for clinicians in 2023. This online tool helps doctors more easily identify IBC and guide treatment decisions. Supported by a $700,000 investment from Komen and its partners, the scoring system has been validated and used more than 7,500 times in over 100 countries.

The success of this tool set the stage for a major advocacy push to establish dedicated diagnosis codes for IBC. The new codes — C50.A0, C50.A1 and C50.A2 — will allow for more accurate medical records, better care coordination and smoother insurance processes.

“This is the culmination of nearly a decade of leadership by Komen and our colleagues at the Inflammatory Breast Cancer Research Foundation (IBCRF) and the Milburn Foundation to bring experts together to define IBC, increase diagnosis accuracy and advocate for the tools health care providers need to support patients who are diagnosed with an uncommon form of breast cancer.” - Victoria Smart, senior vice president of mission at Susan G. Komen

Once the new codes go into effect on Oct. 1, they will make it easier for health care providers to document IBC, ensuring

patients can begin the right treatments faster. The codes will also support clinical research by helping experts track how many people are affected, who is most at risk and how different treatments perform.

“This is a historic moment for IBC patients,” said Ginny Mason, an IBC survivor, executive director of IBCRF and

a 25-year patient advocate. “For too long, IBC has been misunderstood and misdiagnosed. The new diagnostic codes are a critical step toward understanding how many cases truly exist for this distinct form of breast cancer and helping patients get the care they need faster.”

Komen and its partners remain committed to driving research, improving diagnosis and supporting patients living with IBC. This progress marks an important step toward better outcomes and saving lives.

Shannon Woodworth is the senior manager of program content at Susan G. Komen.

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Articles

Susan G. Komen, in collaboration with the Inflammatory Breast Cancer Research Foundation and the Milburn Foundation, has achieved a significant milestone in improving care for inflammatory breast cancer (IBC) patients. New diagnosis codes, effective October 1, 2025, will enhance disease documentation, expedite treatment, and facilitate research. Historically, IBC has been challenging to diagnose due to its atypical presentation and lack of specific codes. The IBC Collaborative's efforts, including the development of an IBC Scoring System, have been pivotal in advancing diagnosis accuracy and patient care.

Susan G. Komen is marking a significant milestone in the effort to improve care and outcomes for people facing inflammatory breast cancer (IBC).

New Diagnosis Codes Improve Timely Access Inflammatory Breast Cancer Care

Perioperative immunotherapy for the treatment of non-small cell lung cancer (NSCLC) is starting to exhibit survival benefits among patients, research has shown.

Findings from the second interim analysis of the phase 3 KEYNOTE-671 trial showed that, among 797 participating patients, at a median follow-up of 36.6 months, 36-month overall survival rate (the time a patient lives, regardless of disease status) was 71% among patients treated with perioperative Keytruda (pembrolizumab), meaning it was administered both before and after surgery, versus 64% for patients who received placebo, according to data that were published in 

“In that study, utilizing the [Keytruda] and in an all-comer population — we didn’t exclude those with EGFR or ALK [mutations] — we’re seeing this benefit in overall survival, which is statistically significant,” Dr. Heather Wakelee, Winston Chen and Phyllis Huang Professor and chief of the Division of Oncology at Stanford University in California and principal investigator for KEYNOTE-671, tells CURE. “And we see it in stage 2 as well as stage 3 [disease], we see it in the squamous and the nonsquamous [disease]. But we know that for patients with tumors with EGFR mutations or ALK translocations, they are better treated with adjuvant targeted treatment.”

“An overall survival benefit in one of these trials is remarkable and substantial,” says Dr. Coral Olazagasti, an assistant professor at the Sylvester Comprehensive Cancer Center, University of Miami, and a member of CURE’s advisory board. “And I think it’s something that really makes us think, ‘OK, this is really practice changing.’ ”

In the study, patients with resectable (removable by surgery) stage 2, 3A or 3B NSCLC were assigned to four cycles of presurgical Keytruda plus cisplatin-based chemotherapy, followed by surgery and 13 cycles of postsurgical Keytruda, or four cycles of presurgical placebo plus cisplatin-based chemotherapy, followed by surgery and then 13 cycles of placebo. The median event-free survival (the time after treatment that a patient does not experience complications from disease) was 47.2 months in the Keytruda group and 18.3 months in the placebo group.

Five perioperative immunotherapy trials have shown similar hazard ratios (a statistical measurement of how often an event happens) regarding event-free survival, Wakelee says, “but none of the others have yet shown a definitive overall survival benefit.”

“All the other trials are not mature yet, so we don’t know if they will show or not the overall survival [benefit],” explains Dr. Marina C. Garassino, a professor of medicine at the University of Chicago and one of Wakelee’s co-authors of the study published in 

. “But this approach with the neoadjuvant (presurgical) [immunotherapy] followed by surgery, followed by adjuvant (postsurgical) [immunotherapy], is the only approach that was able to demonstrate an increase in overall survival.

So clearly, this can represent a great breakthrough for the patients.”

Among the patients who have benefited from such a strategy is Tania Chomiak-Salvi, a retired former diplomat who lives in Washington, D.C.

Now 57, Chomiak-Salvi received a diagnosis of breast cancer nearly 30 years ago. She was treated via surgery and chemotherapy, became involved with breast cancer advocacy and proceeded with life as usual.

“I had 28 years of nothing after initial treatment, except for a short blip of a new cancer,” she says.

In 2023, she developed a persistent cough, with an X-ray revealing a mass in her lung.

“That launched me into a new cancer for me, and a new kind of treatment,” she says.

After an initial biopsy, the prospect of perioperative immunotherapy was put on the table “immediately,” she recalls. “I was thinking, ‘I just want to get this thing out,’” she shares. “Interestingly, when I had my initial breast cancer, perioperative anything wasn’t on the table, so it was straight to surgery. And there is a discomfort in knowing that this thing is sitting in you, and you want to just get the knife and take it out. But I get the possibility of shrinking it, and certainly the time of watching it to see, ‘OK, how effective is this treatment going to be for adjuvant [therapy], for catching any last little bits? Let’s see how this tumor reacts, and then at least we know, should we continue with this treatment?’ ”

Chomiak-Salvi started treatment with Keytruda and cisplatin chemotherapy in December 2023, followed by surgery. Her first postsurgery scan revealed a new malignancy on the lining of her lung. So, the decision was made to switch to a different immunotherapy regimen, Opdivo (nivolumab) and Yervoy (ipilimumab). Under this new treatment plan, Chomiak-Salvi says

she’s been experiencing lung inflammation and dry skin. She loves hiking, skiing and traveling, so she maintains an active lifestyle. She incorporates yoga and Pilates into her routine while keeping food and nutrition in mind.

She’s also involved with a nonprofit organization, the LUNGevity Foundation, which her oncologist referred her to. “It completely shifted my perspective on the disease and what I was up against and what I could do and how I could manage the mental health side of things,” she says.

The consideration of perioperative immunotherapy represents a change in mindset compared with past years.

“Before, every patient that had a resectable [tumor] … used to get surgery in the beginning, followed by chemotherapy or a different treatment afterwards,” says Olazagasti. “But now, in recent years, things have changed, and there have been instances where we have been doing up-front treatment — this means that we start with chemotherapy and a combination of immunotherapy to try to shrink down your tumor as much as possible, what we call in oncology ‘debulking’ — followed by surgery, and we have seen great outcomes with this.”

Findings from KEYNOTE-671 resulted in the October 2023 approval by the Food and Drug Administration (FDA) of Keytruda with platinum-containing chemotherapy as neoadjuvant treatment and with continuation of single-agent Keytruda as postsurgical treatment for resectable NSCLC.

That was followed in August 2024 by the FDA’s approval of Imfinzi (durvalumab) with platinum-containing chemotherapy

as neoadjuvant treatment, followed by single-agent postsurgical Imfinzi for adults with resectable NSCLC with no known EGFR mutations or ALK rearrangements, based on the findings of the phase 3 AEGEAN trial.

In October 2024, the FDA approved, based on the findings of the phase 3 CHECKMATE-77T trial, Opdivo with platinum-doublet chemotherapy as neoadjuvant treatment followed by single-agent Opdivo after surgery for adults with resectable NSCLC and no known EGFR mutations or ALK rearrangements.

“The marker for benefit is, after the patients get the surgical resection, how much viable tumor they have left,” says Olazagasti. “And so, for example, these studies with up-front treatment, you want to look into major pathological response, meaning that there’s less than 10% of viable tumor [remaining], or ideally complete pathological response, meaning that there’s really no tumor left whatsoever.

“And, where chemotherapy really didn’t have much benefit in these markers, when we look at the combination of immunotherapy with chemotherapy in the up-front setting, we’re really seeing great responses. For example, with [Opdivo], we saw that the complete pathological response was 24% compared to 2.2% in the patients that only received chemotherapy. The same with [Keytruda], which is another agent that was studied — when you compare [Keytruda] and chemotherapy, 18% of the patients had complete pathological responses, meaning no viable tumor, compared to only 4% of the patients that got chemotherapy alone.”

“What we learned in the last, I would say, six or seven years,” Garassino says, “is that if we start with immunotherapy before [surgery], we expose the T-lymphocytes that are the cells that are responsible for the immunity against the cancer. In that way, they are exposed to the cancer like a virus, so they can be activated and they can expand. And then, you remove the tumor, but you continue to maintain the activation of the T cells also after the surgery, so if there are very few cells after the surgery, the T cells’ activation continues to be active. And the second part, which is the adjuvant component in the perioperative setting, which is the adjuvant immunotherapy after the surgery, can continue to maintain the activation of the T cells.”

Not all patients are candidates for such treatment, as Olazagasti explains. To undergo perioperative immunotherapy, patients should have tumors larger than 4 centimeters, with good Eastern Cooperative Oncology Group performance status, which is an indicator of patients’ ability to complete daily tasks independently. Patients with EGFR or ALK mutations, she says, are generally advised to proceed directly to surgery.

Among Olazagasti’s patients who have undergone perioperative immunotherapy for NSCLC was Antonio Maestegui, 60, of Clewiston, Florida. In January 2023 Maestegui, who works on cars for a living, began experiencing pain that he thought was from a pulled muscle due to heavy lifting.

He went to the emergency room to get the pain addressed.

“They didn’t see the tumor, so I kept on working,” he tells CURE.

He began seeing a physical therapist, but the pain persisted. Six months or so later, he returned to the emergency room, where a computerized tomography scan showed that he had stage 2 NSCLC. Maestegui underwent treatment with chemotherapy and Keytruda, followed by surgery in February 2024.

He continues to undergo infusions of Keytruda and says that although he was warned of potential side effects, he has experienced none, apart from pain from a rib that was cut during surgery.

“The pain is still there, but slowly it’s going away,” he says. Olazagasti notes that the side effect burden of the regimen has been shown to be tolerable in her practice.

At the time of its approval of perioperative Keytruda for NSCLC, the FDA noted that in KEYNOTE-671 the most common side effects reported in at least 20% of patients were nausea, fatigue, neutropenia (a low count of white blood cells known as neutrophils), anemia (a low count of healthy red blood cells), constipation, decreased appetite, decreased white blood cell count, musculoskeletal pain, rash, cough, vomiting, diarrhea and dyspnea (shortness of breath). Six percent of patients who received neoadjuvant Keytruda were unable to receive surgery due to adverse reactions, and 3.1% of patients who received neoadjuvant Keytruda and underwent surgery had delays in surgery due to side effects.

A question that remains for researchers regards the necessity of the adjuvant phase of treatment. “What does the adjuvant [therapy] add is usually the question, and we don’t have any head-to-head trials that have compared that,” Wakelee says, noting that such trials are being designed.

“In 20% of the [patients in the neoadjuvant or perioperative] trials, patients have had such a good response that we can’t find any tumor at the time of surgery, just from those cycles up front,” Wakelee says. “And so, we’re trying to figure out, do they need more treatment or not? So that’s one of the big questions.”

On the other hand, Wakelee notes, some patients may fare better by skipping the neoadjuvant immunotherapy phase and proceeding directly to surgery.

“Surgery is still the definitive cure,” she says. “So, you want to figure out who should just get surgery first, and who really is going to benefit from neoadjuvant [therapy]. And then after the surgery, we need better ways to figure out who’s done, who’s cured and who needs that additional adjuvant piece.”

And, as Garassino stresses, there is the factor of patient choice.

“I leave to the patients the freedom to decide whether they want to stop after the neoadjuvant [therapy] or they want to continue also with the adjuvant [treatment], because we don’t have any clinical trials that are comparing adjuvant and nonadjuvant after the neoadjuvant component,” she says. “I think that overall, we have really great results. The KEYNOTE-671 [trial] showed this, the only trial that showed the benefit in terms of overall survival, and this must be taken into account that that is a perioperative clinical trial. The neoadjuvant is only one small trial that is called CHECKMATE-816 [which led to neoadjuvant Opdivo plus platinum-doublet chemotherapy being approved by the FDA for resectable NSCLC in 2022]. There are a few patients randomized, and this is the only neoadjuvant-only trial. So, we have thousands of patients in the perioperative setting and one small trial in the neoadjuvant [setting].”

Still, Garassino says, these advancements have been revolutionary.

“Overall, in [the past] seven years, this is the revolution,” she says. “We know that the benefit that goes across all the patients … so as a clinician, I recommend to all patients with stage 2 and stage 3 [disease], a neoadjuvant approach followed by the surgery. And, with the final results, I have a full discussion with the patient [about how to proceed].”

Perioperative immunotherapy for non-small cell lung cancer (NSCLC) is showing promising survival benefits, as evidenced by the KEYNOTE-671 trial. This study demonstrated a significant improvement in overall survival rates with Keytruda (pembrolizumab) when administered before and after surgery, compared to placebo. The trial's findings have led to FDA approvals for Keytruda and other immunotherapies in the neoadjuvant and adjuvant settings. While the approach is revolutionary, questions remain about the necessity of adjuvant therapy and patient-specific treatment pathways.

Perioperative immunotherapy for the treatment of non-small cell lung cancer is starting to exhibit survival benefits among patients, research has shown.

Perioperative Immunotherapy ‘Is The Revolution’ in NSCLC

At CURE, we work tirelessly to bring you, our readers, valuable insights into every stage of the cancer journey — including stories of survivorship.

Chester Freeman, who was diagnosed with bladder cancer nine years ago,

 and more recently with chronic lymphocytic leukemia, writes in this seasonal issue of CURE: “I’m grateful that I can live my daily life and enjoy the pleasures of music, art and nature. Those are the things that give me joy. They lift my spirits and lighten my heart. I’m grateful that the lessons I learned from having bladder cancer have given me strength to face the new cancer diagnosis of chronic lymphocytic leukemia.”

“I have a heightened sense of awareness about myself and my body, and I’m learning to appreciate my life as it is, living with cancer,” Chester writes. “I take the good days and the bad days with courage, strength and determination.”

Elsewhere, Kristen Rabe, who received a diagnosis of multiple myeloma, tells us about the 

importance of self-advocacy for fellow patients.

“As patients with cancer, we see so many professionals who make important judgments about our care,” she writes. “Some spend a lot of time with us, others just a few minutes. We must be vigilant and speak up if we don’t agree or aren’t comfortable with a recommendation. Being an active participant helps ensure appropriate medical care and is vital to our emotional self-care.”

we speak with survivor, advocate and author Daniel Jernazian

, who was diagnosed with Hodgkin lymphoma at age 11, about his memoir, “I Made Cancer Cry Twice.” We also learned from Dr. John Lin of the University of Pennsylvania about the need for reliable access to healthy food, as food insecurity has been found in his research to be linked to a 28% higher risk of death among cancer survivors.

“Food security — meaning reliable access to nutritious food — is critical for cancer survivors because the body needs fuel to recover from cancer and cancer treatment,” Lin said. “Having sufficient nutrition is important for immune function, energy levels and healing, but cancer survivors who are food insecure may struggle to consume the nutrient-rich foods that support healing.”

we spoke with Kanisha Parikh, a dietitian at John Theurer Cancer Center,

 part of Hackensack Meridian Health in New Jersey, for a cooking demonstration that can be viewed at curetoday.com. The recipe is a lentil tomato soup intended to help patients manage common side effects from treatment, such as taste changes, nausea, painful swallowing and mouth sores.

“This recipe is packed with flavor from ingredients like tomatoes, lemon juice and warming spices such as cumin, coriander, smoked paprika and cinnamon,” Parikh said. “The lentils provide protein, and ingredients like olive oil and whole milk add calories and healthy fats to help prevent unintentional weight loss.”

For all the latest updates in oncology, including breaking news on Food and Drug Administration approvals of new treatments and expert perspectives on key cancer information, you can always visit curetoday.com.

In the pages of this issue and on our website, you will find both personal stories that resonate and expert opinions to provide context. We hope this information serves you well and offers encouragement and support.

CURE provides valuable insights into the cancer journey, featuring personal stories and expert opinions. Chester Freeman shares his experience living with bladder cancer and chronic lymphocytic leukemia, emphasizing gratitude and resilience. Kristen Rabe highlights the importance of self-advocacy in cancer care. Daniel Jernazian discusses his memoir on surviving Hodgkin lymphoma. Dr. John Lin stresses the link between food insecurity and increased mortality risk among cancer survivors. Kanisha Parikh offers a nutritious lentil tomato soup recipe to manage treatment side effects. Visit curetoday.com for updates and resources.

This issue of CURE highlights personal stories and expert insights, from living with multiple diagnoses to self-advocacy, nutrition and survivorship care.

Sharing Stories of Survivorship

Over the past 20 years, there have been dramatic advances in treatment options for people diagnosed with lung cancer. Small molecules that target specific alterations in lung cancer, referred to as targeted therapies and immunotherapies, which activate our immune system to better recognize cancer as foreign, have revolutionized how we think about and treat lung cancer. These therapies were initially studied in people with stage 4 metastatic or incurable lung cancer and have dramatically improved outcomes and quality of life for our patients and family members.

Historically, people diagnosed with early-stage lung cancer (stage 1B to 3A) who underwent curative intent surgical resection had unacceptably high rates of recurrence of their disease. Staging systems using the TNM classification — (T) tumor size, (N) lymph nodes and (M) metastases — help us better prognosticate risk of recurrence and potential benefit for therapy before resection (neoadjuvant) or after resection (adjuvant). The recognition that micrometastatic disease, cancer cells outside the primary tumor and beyond the surgeon’s grasp, can contribute to recurrence of disease has driven the field to take a more holistic approach to reduce the recurrence risks and increase the rate of cure. Systemic therapies are critical in reducing the risk of recurrence and increasing the rates of cure. Unfortunately, chemotherapy only minimally improved the rates of survival in resectable early-stage lung cancer.

Due to tremendous advances in our understanding of the biology of cancer, novel systemic therapies such as immunotherapy and targeted therapy are now being utilized in early-stage lung cancer with dramatic improvements in outcomes. As a practicing thoracic medical oncologist, I now recommend perioperative therapy: systemic treatment both before and after resection. I often discuss this approach as having “two shots on goal.” The surgery is a window into how well the treatments worked, and we can now understand the degree or depth of response to treatment based on the resected surgical specimen.

Ms. D., a kindergarten teacher and grandmother with a history of smoking and high blood pressure, was diagnosed with stage 3 lung cancer. The tumor measured 5 centimeters and was in her right upper lung. Based on initial imaging and testing, she was found to have involvement of one lymph node with lung cancer adjacent to the primary tumor. Given the size of her tumor and lymph node involvement, it was determined to be stage 3 lung cancer. After consulting with thoracic surgery, radiation oncology and medical oncology, she was deemed to have resectable disease. I explained to her that with resection alone, there was approximately a 75% chance that her cancer would recur over the ensuing five years and that by utilizing a perioperative approach of chemotherapy and immunotherapy, we could reduce the risk of recurrence dramatically. She opted to receive three months of chemotherapy and immunotherapy before surgery and tolerated treatment well overall.

Our first interval imaging revealed a significant reduction in the tumor size, and the previously enlarged lymph node was no longer visible.

Given her encouraging response to neoadjuvant therapy, she proceeded to the operating room, where she underwent a robotic resection of her right upper lobe and sampling of her lymph nodes in the chest. We were very encouraged when the final pathology results showed that she had no evidence of any cancer present, known as a complete pathologic response. Clinical trials utilizing perioperative approaches with chemotherapy and immunotherapy have shown improvement in overall survival and have now become a standard of care in clinical practice.

Perioperative therapy represents a real step forward in patient care. This approach not only boosts survival rates but may also facilitate less extensive surgeries by reducing tumor size and burden, potentially improving surgical outcomes and recovery time for our patients.

Chemotherapy and immunotherapy are not without side effects; these approaches should be discussed with your medical team. It is also important to note that some people diagnosed with lung cancer may not have deep responses to immunotherapy, such as people with a specific driver mutation (for example, EGFR). These patients may benefit more from targeted therapies. Therefore, it is critical to discuss these options with your health care team to craft the best personalized approach.

Over the last two decades, lung cancer treatment has significantly evolved with the introduction of targeted therapies and immunotherapies, improving outcomes for patients, especially those with stage 4 cancer. Historically, early-stage lung cancer patients faced high recurrence rates post-surgery. Advances in systemic therapies, including perioperative approaches combining chemotherapy and immunotherapy, have shown promising results in reducing recurrence and improving survival. Personalized treatment plans are crucial, as responses to therapies can vary based on genetic factors. Perioperative therapy not only enhances survival but also potentially improves surgical outcomes.

Living With CLL

Over the past 20 years, there have been dramatic advances in treatment options for people diagnosed with non-small cell lung cancer

CURE Fall 2025

New Diagnosis Codes Improve Timely Access Inflammatory Breast Cancer Care

Perioperative Immunotherapy ‘Is The Revolution’ in NSCLC

Sharing Stories of Survivorship

Perioperative Therapy in Resectable NSCLC: The Drive for a Cure

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